Can they fix it? Yes they can!

It’s Cleft Lip and Palate Awareness Week.  These awareness events usually pass me by, but here’s one I can get behind because it affects our family.  Our daughter was born with a cleft lip and this is our experience of it. Thank you to our daughter for letting me post her photos.

If you’re in the UK and you’ve found this blog post via an internet search, looking for information about cleft lip because you’ve discovered that your baby has one, then can I say two things:

1)      Don’t Panic
2)      You’re in VERY good hands

There are certain things people say to you that stick in your memory:  ‘I love you’, ‘will you marry me’ and ‘do you want fries with that’, are notables.  In my case, it’s four little words that were said by a midwife, at approximately ten past seven on Friday 1st August 1997.

“They can fix that.”

“That”, was our newborn daughter’s cleft lip, which hadn’t been picked up in the routine scans. “They” were the cleft team that my husband and I were just about to meet.

In the UK, cleft lip and/or palate affects approximately 15 children per every 10,000 live births.  In 2009, 878 children were born with a cleft lip, a cleft palate or a combination of the two (source: CRANE Database).  In some cases it’s associated with other congenital abnormalities or can be traced genetically through families.  In our case it was neither, it was just one of those things that happened.

The head of a baby is formed very early on at 6-8 weeks and its development is sensitive to environmental and genetic factors.  As there don’t appear to be any genetic factors at work in either mine or my husband’s families, we have to conclude that when our daughters’ upper lip was being formed, something (we don’t know what), affected it and it didn’t knit together correctly.  This resulted in a unilateral complete cleft, a fissure in her upper lip that extended up into her nose.  That’s probably not going to make much sense to you, so here she is, aged 6 weeks.

As you can see, that’s going to present a problem if you want to breast feed. It’s not going to happen let me tell you and it wasn’t for lack of trying.  Neither is bottle-feeding using a standard teat, because cleft babies just don’t have the suck required to get the stuff out of the bottle.  At this point my husband and I became aware of our first superhero:  Step forward Mandy Haberman, inventor of the Haberman feeder.

This is a soft teat that goes on the top of a standard baby bottle and gives you the added advantage of being able to squirt the milk into the baby’s mouth.  Very simple but an absolute godsend!  Thank you, thank you, thank you Mandy Haberman!

But let’s back it up a bit, to those initial few days after your baby’s birth. The days when your learning curve already resembles Mount Everest, and fate decides it’s a fun idea to stick Ben Nevis on the top. Those four words that our midwife said were deeply reassuring and fabulously true.

I can only speak from experience of cleft lip and palate treatment in the UK, but I know that the way it’s arranged is seen as a model of best practice and is copied elsewhere.  Cleft teams operate out of regional centres and when our daughter was born in Cheltenham; our nearest regional centre was at Frenchay Hospital, Bristol.  But we didn’t go to them; they sent someone to us, because when a cleft baby is born you’re going to want to ask questions.  We had someone with us the very next morning, who talked us through everything and said it all again – for the benefit of me with ‘New Mummy Brain.’

Shortly afterwards we went down to Frenchay to meet the rest of the team. We weren’t just meeting a plastic surgeon (step forward our second superhero Nigel Mercer); it was a speech therapist, a psychologist, an orthodontist, craniofacial surgeon, an audiologist, a paediatrician and so on.  Everybody our daughter needed to see was in one place and working together.   The NHS gets a lot of criticism levelled at it, but when you need a cleft team, they’re THERE and they all really need to be given blue capes!

At eleven weeks old she went to Frenchay for her first operation.  This was to bring together the two parts of her upper lip.  Giving my daughter over to the care of an anaesthetist was a bit of a weepy experience, but they’re very good with Mums who lose it…  Two and a half hours later we returned to find our little girl sporting a set of pussy-cat whiskers (wound closure tape), bandages around her arms to stop her scratching it all off and a stent up her nose to help shape her flattened nostril.   Voila!

We kept that in place for a couple of months and then by nine months she looked like this:  Cleft?  What cleft?

At the age of 8 it was more surgery.  This was to close the gap in her jaw, grafting a piece of bone from her hip into her gum and closing the cleft that extend into her nose.  By then, we’d moved from Frenchay’s catchment and were now living in Bedfordshire, which is covered by Cleft.Net.East at Addenbrookes.  We swapped one marvellous cleft team for another.  Her surgery took place in 2005 and here she is afterwards.  Believe me, incredibly scary things can be achieved when you have Pink Bear under your arm!

Our daughter has been fortunate, in that her speech has never been affected.  Neither has her hearing – although we’re now in the period when she’s deaf to anything her parents say.  Shortly after her bone graft surgery, she worked with the psychologist as they looked at building self-confidence and coping strategies, for the sometimes catty comments of the unthinking playground twerp.  It happens sometimes, but she deals with it.

Now she’s 14 and we’re in the seemingly endless round of visits to the Orthodontist.  But he’s worked marvels, taking her ‘interestingly arranged’ teeth and shaping them into something that looks like a big cheesy grin, which she’s going to model for you here.

So please, if you know anyone in the future whose baby is discovered to have a cleft lip or palate, please don’t say ‘oh what a shame,’ please say these four very true and very reassuring words:

“They can fix that.” Because as you can see… They can!

Other sources of information:
CLAPA – The Cleft Lip and Palate Association. The only resource you need for information in the UK

This entry was posted in Health and tagged . Bookmark the permalink.

13 Responses to Can they fix it? Yes they can!

  1. I too was born with a cleft palate. That was back in the dark ages (1965). I had a series of operations at the Sheffield Children’s Hospital, followed by lots of speech therapy.

    This has been an interesting read Rachel. Thank you for posting it 🙂
    In the UK, cleft lip and/or palate affects approximately 15 children per every 10,000 –
    Wow I always knew I was special 😉

  2. Allison Stein says:

    Beautiful story, beautifully written… and your daughter is absolutely beautiful!

  3. Marion says:

    Excellent and encouraging piece of writing. Will help so many.

    A lovely pic of your daughter too!

  4. Ali says:

    Great post Rae
    A trip down Memory Lane for me too – amazing to see Hannah’s progress through the photos. Seeing her as she is now, I don’t recall her cleft at all. Thank you Hannah for sharing your journey 🙂

  5. Soraya says:

    Thanks so much for blogging about this. Our son has a cleft lip and palate and is going in to have his bone graft this week 🙂

    Absolutely true and beautifully expressed – thanks again.

    • Rachel J Lewis says:

      Thanks for the comment, hope it goes well for him. The hip is the thing that takes ages to settle down again, so be prepared for a bit of grumbling about it.

  6. Jo Jenkins says:

    I can only endorse what others have written- a great post and an uplifting account of your family’s experience. Really pleased to have come across this via a Twitter hashtag: awareness weeks do work!

  7. Pingback: April News | Rachel J Lewis

  8. Kate Magill says:

    Such a lovely way of addressing this very serious issue. I was born with a cleft lip & palate, but was so fortunate to have groundbreaking surgery in the early eighties. It seems there is a lot more support these days, than when I was born, as I was taken from my mum immediately and she wasn’t given the support she needed when they explained what had happened to me.
    Having said that CLAPA are a wonderful organisation, who helped us all immensley when I was little, so hats off to them for all the great work they do!

    • Rachel J Lewis says:

      Thanks for your comment. Yes, I think they have a great system in place now for both the babies and for the parents of cleft babies.

  9. Fred Pulver says:

    Thank you for telling your story. It was moving and helpful.

Leave a Reply

Your email address will not be published. Required fields are marked *